Needs management in families affected by childhood-onset dystrophinopathies

Kristin Conway; Katy Eichinger; Christina Trout; Paul Romitti; Katherine Mathews; Shree Pandya; Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet)

doi:10.1177/2050312119834470

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Needs management in families affected by childhood-onset dystrophinopathies

Journal article

Open access

Peer reviewed

Needs management in families affected by childhood-onset dystrophinopathies

Kristin Conway, Katy Eichinger, Christina Trout, Paul Romitti, Katherine Mathews, Shree Pandya and Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet)

SAGE open medicine, Vol.7, pp.205031211983447-2050312119834470

2019

DOI: 10.1177/2050312119834470

PMCID: PMC6399767

PMID: 30854202

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Abstract

Purpose: To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States.Methods: Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual's functioning.Results: Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support.Conclusions: Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.

Details

Title: Subtitle: Needs management in families affected by childhood-onset dystrophinopathies
Creators: Kristin Conway
Katy Eichinger
Christina Trout
Paul Romitti
Katherine Mathews
Shree Pandya
Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet)
Resource Type: Journal article
Publication Details: SAGE open medicine, Vol.7, pp.205031211983447-2050312119834470
DOI: 10.1177/2050312119834470
PMID: 30854202
PMCID: PMC6399767
NLM abbreviation: SAGE Open Med
ISSN: 2050-3121
eISSN: 2050-3121
Grant note: DOI: 10.13039/100000030, name: Centers for Disease Control and Prevention, award: DD000187, DD000189, DD000190, DD000191, DD000392,
Language: English
Date published: 2019
Academic Unit: Neurology; Stead Family Department of Pediatrics; Epidemiology; Iowa Neuroscience Institute; Biostatistics; Neurology (Pediatrics)
Record Identifier: 9983995063602771

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